A working group of doctors, healthcare professionals and clinical researchers are presenting members of parliament (MPs) at a special parliamentary drop in session today, Wednesday, with a report written in April this year.
The report was produced by Dr Helena Marzo-Ortega, from the University of Leeds and the Leeds Teaching Hospitals NHS Trust, and colleagues, and is published by the National Ankylosing Spondylitis Society (NASS).
AS affects between 2 and 5 adults in every 1,000, with about 200,000 people affected in the UK which is around twice the number of people with multiple sclerosis (MS).
It is an inflammatory condition that affects the joints of the spine and often starts with back pain and stiffness. As the inflammation subsides, new bone forms, replacing softer and more flexible tendons and ligaments that sit between the vertebrae, and around one in four cases results in deformation of the spine due to complete fusing of the backbone.
People with AS gradually become more and more disabled, as their symptoms worsen. They are forced to take time off work, and some have to give up work completely.
The report authors say that GPs often confuse the symptoms of AS, a progressive type of arthritis that can result in spine deformation and severe disability, with more common kinds of back pain, even though there is now widespread agreement on how best to diagnose and manage the condition.
Marzo-Ortega and colleagues are lobbying MPs to make essential tests and therapies more accessible.
It can take some patients up to ten years to receive a correct diagnosis, Marzo-Ortega told the press.
"GPs are often unable to distinguish the signs of this inflammatory disorder from other more common kinds of spinal pain," she explained, adding that it was vital to refer anyone with suspected AS to a specialist rheumatologist.
Greater access to essential tests would speed up correct diagnosis and help doctors confirm suspicions of AS, while making therapies more accessible could limit the damage caused by the disease and improve patients' mobility, say the report authors.
In their report, Marzo-Ortega and colleagues push for:
- Greater use of magnetic resonance imaging (MRI) and specialist blood tests to speed up the diagnosis of AS.
- Improving access to physiotherapy and hydrotherapy to help AP patients stay mobile.
- Giving patients more information about new, effective treatments for AS, including "anti-TNF" drugs and spinal surgery.
"Patients should also be monitored closely even if they do not seem to be getting any worse," she added, because the condition can often progress very slowly, with patients feeling OK until they experience a sudden "flare up".
In a Foreword to the report, Jane Skerrett, Director of NASS and a member of the working group behind the report, pays tribute to some of the "centres of excellence" for the treatment of AS in the UK; describing how they and the staff who run them are highly valued by the NASS and individual AS patients.
"But the number of these centres in the NHS is limited and too few patients receive optimum care as a result," she writes, noting that this "has a huge impact not only on individuals and their families but also on society".
"It is time for this to change, particularly since we now have the knowledge and tools to do things better," she adds.
Looking ahead: best practice for the care of people with ankylosing spondylitis (AS)
Trish Cornell, Karl Gaffney, Andrew Keat, Kirsten MacKay, Helena Marzo-Ortega, Jane Skerrett, Liz Van Rossen, Paul Wordsworth (working group behind the report).
NASS (PDF download) April 2010.
Sources: University of Leeds, NASS.